I am not sure if I have ever seen anyone enjoy life more than our 4 year old little girl Ella.  Her smile will make the gloomiest Portland day turn 80 degrees and sunny.  She loves to laugh, play with her little brother Alex, listen to music, and wrestle with our dog Mulligan and her Uncle Ryan.  She can’t wait to get outside and play with all of the kids in the neighborhood.  She truly is a blessing and we thank God for her every day.

On a rainy December Saturday in 2007, our lives were turned upside down.  Ella was diagnosed with Rett Syndrome, a childhood neurodevelopmental disorder characterized by normal early development followed by a loss of motor skills and speech.   It is very rare and found exclusively in girls, and affects 1 in every 20,000 or so girls.   As most of our friends and family know, Ella had previously received a diagnosis of being Autistic.  I thought I would never say this, but unfortunately that has turned out to not be the case.  If you are interested in learning  more about Rett syndrome, here is a link to the International Rett Syndrome Foundation.  www.rettsyndrome.org

We  are so thankful for the support and prayers we have received from an incredible network of family, friends, and co-workers.  There is a tremendous amount of research being done around the disease and there could be some very significant breakthroughs with regards to the treatment of Rett’s.  We are going to jump in as soon as we can and help starting to be advocates for Ella and all the other girls in the world who are suffering from this tragic disorder.

Below is  a link to a You Tube video of Ella when she was 15 months before her regression.

http://www.youtube.com/watch?v=-NX1WJBjw6E

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